Author Archives: michaelandmomtalkcancer

A May Update: Insurance Denials, a New Clinical Trial, More Time in the Hospital, and So Many Metaphors

May 2025 update

To my dear beautiful friends and family who are always with me, held close to my heart, even during these bouts of my inadvertent “radio silence”,

It has been almost 3 months since my last love letter to you, but for this mama, it feels like ever so much longer. One of the welcome side effects of cancer, every single moment is precious. It makes life fuller. Causes time to slow down a bit. It’s a lesson I try not to forget, even as the day to day tugs at me to get distracted and hurried by the mundane. 

I ended the previous message in March on the hopeful note of Michael starting a newly FDA-approved  immunotherapy infusion in the days to come. Axatilimab. His truly wonderful and ultra legendary GVHD doctor, Dr. Trent Wang, has his fingers on the pulse of every new therapy, drug, treatment, life-style enhancement, tip and trick that can possibly help his chronic GVHD patients live longer, less painful and better quality lives. We had heard about this new immunotherapy from Dr. Wang (AKA “T Dubs”) months ago. Michael’s GVHD has been flaring up little by little since February, a bit like watching the proverbial pot boil. His eyes are more sensitive. His mouth has continuous mouth sores. His body has new markings that show up like patches of thick, stiff camouflage on his skin. His liver enzymes have been creeping up. Not exactly life-threatening today. Not urgent at this exact moment. Nothing is burning on the stove, but it has been getting warmer. Hotter. Simmering. This mama has been trying not to worry. Keeping our life’s perspective from the past almost 5 years in mind. Don’t panic! Remember PTG (post traumatic growth), do not fall prey to PTSD (post traumatic stress). It could always be worse. Every day we are alive is a gift. We are sleeping at home every night, not in the hospital. Michael can eat. He is going to the gym. He has the best doctors caring for him and watching the pot to make sure it does not reach the boiling point. As you can imagine, Michael and I welcomed the new line of treatment, the new immunotherapy, with relief, optimism, hope, and gratitude. The timing was impeccable. The only thing holding us back from the first infusion in March was waiting (and waiting) for the insurance to complete the incontestable approval. Of course, as life seems to go in this nothing-is-sure-but-death-and-taxes world, the undeniable authorization was denied. We appealed. Denied again. And again. And again. Michael’s new insurance has allowed us to continue at Sylvester Cancer Center with his formidable team of doctors and nurses, but that does not mean it has picked up ALL the slack. Since losing Michael’s Medicare and Medicaid at the start of 2025, we are having more than just financial impacts of higher premiums. I have had to accept a few unexpected steps back in our cha cha, as the music seemed to fade out, stop, or maybe just pause. There have been restless nights, realizing anew that I can’t do the one thing every parent desires, protect my child. Now I find myself fighting for treatments that in the past were approved with little or no question. Not insurmountable but these are new hurdles. Since March, I have been training to jump a little higher. Anticipate a little sooner. Raise my voice a little louder. Dance a little bolder, even in the silence. I sent a million emails, made just as many calls, and probably drove some very good people in the healthcare world a little crazy. But remember, I believe in magic, miracles, and our cha cha. And right on time, the music started again, and the steps forward showed up in the choreography as a clinical trial. Not just any clinical trial, a miraculous one that was happening in Miami, at Sylvester, with Michael’s doctor, AND Michael met all the criteria. 

If you don’t know much about clinical trials that is probably a good sign. It means you have not needed one. But just to fill you in with some fun, fast facts, these trials are packed with prerequisites, caveats, restrictions. All for the sake of medicine and science, but we know far too many oncology patients (including my late husband Patrice), who have attempted to get into clinical trials, and were turned away due to what seemed like minor details. Policies are strict, adherence is obligatory. Oh, and location is key. Hence, getting Michael into this trial has been a sigh of relief. You know, “when one door closes a window opens”. This window happens to be far more time consuming than walking through an open door, but isn’t that what makes life interesting? The serendipity and surprises? The occasional slowing down and taking in the scenery? The trial is expected to last 6 months. The pharmaceutical company funding the trial is willing to give it a go for 26 weeks, then let’s see. We are taking it day by day. It combines the latest GVHD immunotherapy (the immunotherapy the insurance denied by the way) with our old friend, extracorporeal photopheresis (ECP), the blood treatment you all must recognize by now from my previous posts. Michael has spent almost 4 years in the hospital, twice a week, with me beside him, receiving ECP. Recently Dr. Wang has been trying to wean him off the time-consuming treatment in favor of the new immunotherapy. Replace the old with the new. ECP has been so valuable, even life-saving, but it is usually intended to be given for 6 -12 months, not the multiple years Michael has been at it. It’s been effective but tedious. The port access is painful. The hours in the hospital are full days. The treatment itself is exhausting. The nurses in the pheresis unit have become family, the most beautiful gift, but it was pretty cool the last few months for Michael to have a little less time in the hospital receiving ECP. It meant Michael could surf again between treatments, get in the ocean, find a bit more quality of life. Apparently it’s time to pay the piper. With Michael’s GVHD getting more and more active, and the clinical trial opening, we are back to ECP twice a week every week, and in the hospital 3 days a week between ECP, immunotherapy and follow up appointments.  Not exactly full time, but darn close. Again, not to be redundant, but it’s our cha cha. I embrace it lovingly. Healing is not linear. We are alive. Dancing. Grateful. Not out of the woods, but we can look up and see the stars. As usual, I am mixing up my far too many metaphors. Hurdles, dances, boiling pots, and now the woods. Hopefully, you are still with me…..

So, June approaches and here we are. Week #3 of the trial. Michael is feeling good. He’s tired. He has a new rash and a pesky cough that seems to be more annoying than important. We were blessed to celebrate his 24th birthday last week at Sylvester, seeing Dr. Wang, getting labs, in the hospital, with one of his favorite nurses of all time, Jesus. They have ALMOST the same birthday and for the last 3 years we have shared homemade almond flour brownies, creatively wholesome cake, birthday memes and ECP to commemorate these two beautiful May men….  They blew out candles and made a million wishes, or actually, maybe just one, to enjoy this moment. Together. However long it may last…. 

My sweet little children’s book about Michael and the first days of his cancer diagnosis is coming out this summer…. And I am continuing to work on my manual for caregivers, sharing the things I needed, and still need, to hear…. Michael and I have more advocacy days coming up this summer. Maybe going through these unexpected new experiences with insurance, clinical trials, Medicare and Medicaid happened for a reason, making sure our challenges are not for naught. We are determined to continue to use all we have been through to make the world a little better. Maybe it is our purpose, or maybe we are simply finding meaning in what has been dealt to us. Either way, I’ll take it. I am still blown away by Michael and how he has stepped up with so much grace and grit. I am still humbled by you. Your unwavering love and support. Most of all, I am just grateful to be alive, to connect, to love, to dance. With you.

I love you all so much.

March 2025, loud love, new insurance, no bouncing back

Hello dear beautiful friends who are in my heart constantly, even when you may not know it….. I feel your thunderous support, even when I am quiet.

It has been a while since my last love letter to you all, but not for lack of love. I suppose, as I said in my last, reluctant update, I have not wanted to bother you, burden you. Maybe because I am trying to figure out how to live, how to move forward, face the day-to-day challenges, stand and walk on my own. You have all been such willing members of my tribe, OUR tribe, but we are all, every one of us, going through so much.  I do not want you to feel I am taking your energy and love, your unending support and compassion, for granted. But the flip side, filling you in, holding you close, sharing our ups and down, ins and outs, our beautiful chacha dance that we seem to come back to continuously, HAS also given us the gift of connection, created more community, brought us together. I feel the great importance of the bond we have built, as we rally around each other, to lift each other up. The perk we all need: shared human experience. It is sometimes easier for this mama/caregiver to stay muted, particularly now, after more than 4 years of updates and filling you in, but I know my isolation is not a show of strength, it is an escape. Vulnerability can feel like failure and most certainly weakness, especially for such a long period of time…… even if Brene Brown tells me it is not. So, the last couple of months I have been quiet, trying to sail solo, but today I reach out and open my heart.

Recently it seems we have been through so many more iterations and evolutions of this “cancer” and “result-of-cancer” life.  I almost wrote “post” cancer, but even for this very optimistic girl, “post” cancer sounds like we are done. Like it is over. It is not. I think in the case of Michael, it will never be “post”. What I always say: we cannot bounce back. Cancer and its effects will always be part of us. There is no going back. But as you know, that leaves tremendous space for bouncing forward. For growing. For adapting and becoming more.  Michael is getting stronger. With the help of medications and natural remedies, he has gained a bit of weight and at long last, more muscle and might! Even with the right supplements and stretches, he experiences daily bouts of muscle cramping, most likely from GVHD. A pesky side effect he will gladly live with in exchange for working out again. He loves going to the gym, even if he cannot pull up or pull down as he did before cancer. It makes him feel like a part of society, I think. Lifting weights, even light, is something he never thought he would do again. And there he is, one more time, defying the odds. Pale skin. Thinner than before. Scars and skin discoloration from cancer, high doses of steroids, and skin GVHD, are on display on his bare arms and shoulders when he wears his cut off muscle tees. Obvious in the bright overhead lights for the other gym rats to see and perhaps ponder momentarily, but who cares? The other gym goers are pretty wrapped up in themselves, keeping the sideways glances at Michael minimal. Sometimes I notice, but I brush it off. As long as Michael is ok, I am more than ok.

We are still waiting to get a hold of a newly FDA approved Graft Versus Host Disease infusion that will hopefully start in the coming weeks. Axatilimab. It would be every other week for 3 months. See how it goes. Michael’s very optimistic GVHD doctor has him on the hospital schedule to receive the first dose on April 9th. Our fingers are crossed. So are our toes, arms, legs, hands, eyes, and anything else that might possibly bring good luck. His chronic GVHD has become more active recently, especially skin and liver, making the new infusion a bit more pressing. Not life threatening today, but not to be ignored, either. This month we did get an untimely wrench thrown into the mix when Michael lost his Medicare health coverage. A drawn-out story that has probably cost me a hundred hours on the phone (nope, I’m not exaggerating). At long last I found a new policy for Michael, yet I cannot seem to let go of my deep fear that the new insurance will be more challenging when it comes to approving the latest infusions and treatments. They have already denied one of his necessary GVHD meds, but thankfully there are grants and financial assistance I am learning to navigate. Another new “momcologist” expertise I can add to my resume. Master of filling out financial forms. Not a skill I ever expected or wanted to learn, but necessity is a great motivator. I do hold hope, as I trust the universe, confident it will work out. It always does, right? The worries that we think are the end of the world, rarely are. The sun keeps on coming up. Giving me another chance to be better. To adapt. Learn. My spiritual journey in this life has certainly included lessons on patience and keeping my inner peace amid turmoil! I am not always succeeding, FYI. But I am working on it as a daily practice. Ommmm…..

In the coming weeks Michael has appointments with his pulmonologist following up on his lung function, the specialized GVHD dermatologist and ophthalmologist, and soon a new nephrologist, checking in on his annoying kidney function that continues to vex his main doctor. Are you drinking enough, Michael? Yes, Dr. Wang. About a zillion liters a day. Peeing about a zillion times, too.

As for me, the sweet children’s story I wrote about Michael’s diagnosis and dancing on the wave of getting a cancer diagnosis is coming together beautifully. I’ve also recently taken on the project of writing a caregiver manual, not sure if it is for me or for others. Don’t we teach best what we need to learn? I think I heard that somewhere. In that case, I should be a really good teacher, because I am learning a lot and still NEED to learn a lot.

As we wait for Michael to be able to receive the infusion, he keeps on with ECP, although less frequently. This gives him time to get in the ocean. Surf. Do more social media. Figure out our path. We plow forward with our little podcast, our advocacy, and we are asked to speak more often at cancer events. We continue to volunteer at the hospitals and for so many beautiful foundations. We are hoping, needing, more paid work, but trusting that the more good we do, the more we give, the better the world will be. That is good enough for me. It is always my purpose, make the world a little better. And then I know we will be able to dance on the waves.  Thank you for being there for us, praying for us, chanting, singing, dancing, and mostly loving us.

Even if it seems I am quiet, know that my love is loud..